What People With Parkinson’s Disease Really Want

What We Heard From Patients and Families

The insights demonstrate how simply asking people with Parkinson’s disease their priorities can drastically alter what we know about their disease and how it is treated. Take cognitive decline and apathy for example:

“Apathy is my priority for researchers because it is so vital to quality of life. After my own diagnosis of PD, if I were left alone without a goal, without support and without encouragement, I might have simply sat on the couch, reading and watching TV, while life went on around me. Fortunately, once I understood that apathy is a common symptom, and decided to combat my own apathy, it became easier to recognize it and to overcome it — but we need to know more.”  — A.C. Woolnough

“Every person with Parkinson’s fears the threat of cognitive impairment. If you can’t count on your brain to support you the way it always has, you feel like you have lost some of yourself. We need to know if there are things we can do to keep our brains as healthy as possible. We know exercise is important. But, are cognitive exercises also helpful?” —Diane Cook

The result of our “people’s choice” awards is that the disconnect between what matters to patients and what is studied by scientists is now smaller. One wonders how much further along we would be in both the knowledge and treatment of diseases like Parkinson’s if we employed this model years ago. Would we have known much sooner that Parkinson’s is more than a movement disorder? Would we have understood that the non-motor symptoms can have more devastating consequences on people’s’ lives?
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